ILLINOIS PANDAS/PANS ADVISORY ILLINOIS PANDAS/PANS ADVISORY COUNCIL The Illinois PANDAS/PANS...

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  • ILLINOIS PANDAS/PANS ADVISORY COUNCIL

    2016 Report December 14, 2016

  • ILLINOIS PANDAS/PANS ADVISORY COUNCIL – 2016 REPORT

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    TABLE OF CONTENTS

    ILLINOIS PANDAS/PANS ADVISORY COUNCIL MEMBERSHIP .................................. 3 ILLINOIS PANDAS/PANS ADVISORY COUNCIL ............................................................ 3 UNDERSTANDING PANDAS/PANS ................................................................................ 4

    Epidemiology/Demographics ............................................................................................ 4 Clinical Presentation ........................................................................................................ 5 Clinical Management ........................................................................................................ 5 Etiology and Disease Mechanisms for PANDAS (Post-streptococcal symptoms) ............ 6

    PANDAS/PANS BURDEN IN ILLINOIS ........................................................................... 7 STANDARD DIAGNOSTIC AND TREATMENT GUIDELINES ........................................ 8

    Absolute Criteria ................................................................................................................ 8 Major Criteria ..................................................................................................................... 8 Minor Criteria Group 1 ....................................................................................................... 8 Minor Criteria Group 2 ....................................................................................................... 8 Diagnostic Formulas ......................................................................................................... 8 Additional Supporting Evidence ....................................................................................... 9

    INCREASING CLINICAL AWARENESS ........................................................................ 11 OUTREACH ................................................................................................................... 11 NETWORK OF EXPERTS ............................................................................................. 11 RECOMMENDATIONS FOR THE FUTURE ................................................................. 12

    ENACT STANDARD PRACTICE GUIDELINES .............................................................. 12 DEVELOP MECHANISMS TO INCREASE PUBLIC AWARENESS ............................... 12 PROVIDE OUTREACH TO EDUCATORS AND PARENTS ........................................... 13 INCREASE UNDERSTANDING OF THE BURDEN ON ILLINOIS ................................. 13

    CITATIONS .................................................................................................................... 14

  • ILLINOIS PANDAS/PANS ADVISORY COUNCIL – 2016 REPORT

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    ILLINOIS PANDAS/PANS ADVISORY COUNCIL MEMBERSHIP • Dr. Anette Mnabhi, DO, Synergy Health Care, Co-Chair • Dr Natalie Drummond, MD, Whole Child Pediatrics, Co-Chair • Laura Vaught, Legislative Liaison, Illinois Department of Public Health • Illinois Representative Patti Bellock • Diana Brown, District 45, Psychologist • Kathleen M. Casey, RN, PEL-CSN, Illinois Association of School Nurses • Dr. Pamela Campbell, MD, Division Chief Child Psychiatry, Southern Illinois University • Illinois Representative Deb Conroy • Illinois Senator Tom Cullerton • Catherine Drury, PANDAS/PANS Parent • Jessica Gerdes, MS, RN, NCSN, Principal Consultant/School Health, Illinois State Board of

    Education • Wendy Nawara, MSW, Executive Director, PANDAS/PANS Advocacy and Support • Dr. Greg Sharon, MD, Immunologist, Asthma and Allergy Center • Tiffany Tumminaro, LCSW, CADC, Life Care Counseling • Dr. Anjum Usman, MD, True Health Medical Center • Dr. Susan Swedo, Principal Investigator, Pediatrics and Developmental Neuroscience,

    National Institute of Mental Health

    ILLINOIS PANDAS/PANS ADVISORY COUNCIL The Illinois PANDAS/PANS Advisory Council was created in 2015 in accordance with Public Act 99-0320 to: • To make recommendations concerning standard practice guidelines for PANDAS/PANS • To develop mechanisms to increase clinical awareness of PANDAS/PANS • To provide outreach to educators and parents • To develop of a network of volunteer experts on PANDAS/PANS to serve as resources

    within the State. The Illinois Department of Public Health (IDPH) has managed oversight and support of the 15- member commission since 2015. The priorities of the council have been to adopt a standard of care that medical providers in the state can access and to educate citizens, health providers, mental health providers, medical students, and education professionals on PANDAS/PANS. The council consists of physicians, who are board certified in immunology, pediatrics, psychiatry, osteopathy, and family medicine and have expertise and experience in the diagnostics and treatments of Pediatric Autoimmune Neuropsychiatric Disorders and/or Autism Spectrum Disorders; other health and mental health care professionals with expertise and experience in the diagnostics and treatments of Pediatric Autoimmune Neuropsychiatric Disorders; certified members of the School Health and Special Education Divisions of the State Board of Education; representatives of organizations or groups that advocate on behalf of children and families suffering from PANDAS/PANS and/or Autism Spectrum Disorders; a principal investigator from the National Institute of Mental Health; legislators; and parents of children who have been diagnosed with PANDAS/PANS. The council met six times in 2016.

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    UNDERSTANDING PANDAS/PANS PANDAS = Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections1 PANS = Pediatric Acute-onset Neuropsychiatric Syndrome2

    For nearly thirty years, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) has been studied extensively at the National Institute of Mental Health (NIMH) and elsewhere across the U.S. and internationally.3 More recently, a consortium of clinicians, researchers, and scientists has dedicated considerable time and effort to clinical care and study of children with PANDAS and the larger cohort of patients with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).2 A medically treatable cause can be found for most cases of PANDAS and PANS. Preliminary data suggest that with appropriate treatment early in the course of illness, and effective use of antibiotics prophylaxis, we may be able to prevent up to 25-30% of childhood mental illnesses.4 Evidence consists demonstrating that Group A streptococcal infections (GAS) are the causal factor in PANDAS. Antibody studies demonstrate that children with PANDAS have antibodies that invoke bioactivity to produce the acute symptomatology.5-8 Animal studies show the transference of antibodies from an originally infected mouse to a naïve, healthy mouse to produce the same behavioral abnormalities and OCD symptoms.9-10 This demonstrates that PANDAS/PANS is an immune mediated antibody process. Placebo-controlled trials of antibiotic therapies demonstrate significant benefits for both PANDAS and PANS, and trials of prophylactic antibiotics have shown that preventing strep infections leads to reduction or cessation of the neuropsychiatric exacerbations. 11 In mild cases with positive strep cultures, a single course of antibiotics given to eradicate the strep infection can be effective in eliminating the psychiatric and behavioral symptoms. Additionally, a growing body of evidence indicates that PANDAS/PANS are autoimmune encephalitic disorders.12-13 In more moderate to severe presentations of PANDAS/PANS, and when considered medically necessary, physicians must rely on immunomodulatory measures, including steroids, intravenous immunoglobulin (IVIG), and therapeutic plasmapheresis (TPA) to halt this neuroinflammatory process. Children with PANDAS/PANS who do not receive appropriate treatment remain chronically ill and the progression of the disease may exacerbate symptomatology to the extent that they are unable to attend school, participate in the community and in some cases may require institutional care. In the most severe cases, lack of appropriate medical interventions can result in the progression of clinically associated symptoms, which may result in death due to suicide or complications due to anorexia.

    Epidemiology/Demographics • Peak age at onset = 6.5 years2 • Boys outnumber girls approximately 2:12 • 1 in 250 children have impairing symptoms (estimates from clinic populations2,14) • 5 – 10% of grade-school aged children have observable GAS-related neurologic and

    behavioral symptoms14

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    Clinical Presentation PANDAS and PANS are defined by an unusually abrupt onset of obsessive-compulsive disorder (OCD) or eating restrictions/anorexia.1-2 Comorbidity is present in all children, with most having symptoms in at least four categories1-2,15 • Anxiety (particularly separation anxiety) • Emotional lability and/or depression • Irritability, aggression, and/or severely oppositional behaviors • Behavioral (developmental) regression • Deterioration of school performance • Sensory or motor abnormalities • Somatic signs and symp